Friday, October 12, 2012

Special Needs Spotlight: Reese

Hi My name is Meagan! I am the mother to a
beautiful, energetic, strong willed 3 year old little girl and the wife to a
hard working hubby! In my spare time I like to train and run races. I love
spending time with my little family, extended family and friends. Reese is our
only child and an answer to many prayers and is such a blessing in our lives. At
6 months of age Reese was diagnosed with Lebers Congenital Amaurosis, a rare
genetic disease that causes severe vision loss and blindness in infants and children. We love riding four wheelers together
and love learning new thing daily about how to help Reese with her visual
impairment.

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Miggy:Can you take me back to the day you
knew your daughter would have serious vision loss/blindness? Do you
remember how you felt? Can you compare those first thoughts and feelings
with how you feel now?

Meagan:When the doctor took us into the room and told us he needed to talk to
us privately it felt like our whole world was crushing in on us. After he told
us the diagnosis we went into the recovery room with Reese I fell apart the
nurse did not know who she should help more me or Reese. We were in such shock
that day that we went home and couldn't even remember the name of the disease
she had been diagnosed with. We were at a loss of where to start to help
our daughter have the best life possible.

Today we feel so much more hope and have met so
many wonderful people throughout the world who have LCA and they lead great
lives and have given us so much hope. It is still a huge learning curve
everyday for us and our daughter.

Miggy:Explain how Reese’s vision
loss affects your day-to-day life?

Meagan:We usually pick Reese’s clothes out for the next day and set them on the
dresser for her so she knows exactly where they are, if not she gets frustrated
when she can't find the right shoes or shirt because she can't see them. Just this morning she was in her room
and I heard her start crying, I went in to see what was wrong and she had lost
one of her socks and couldn't find it and it was in the middle of the floor but
she had been on her hands and knees searching with her hands and was getting
very frustrated she couldn't find it. Also the house has to be cleaned up all the time with no
objects on the ground unless I tell Reese they are there and she needs to watch
out for them while walking. Reese
is constantly bumping into things and tripping but it never gets to her she
jumps up and keeps going. Reese
has a hard time being entertained she has never watched or listened to TV and she
usually only plays with toys if they make lots of noise or have lots of
textures on them, except for babies and babies she loves both of them. All of Reese's books have Braille in
them and textures which help with stimulation. When we go to a new environment Reese always has
her cane with her but still likes to hold hands as it is scary for her to not
know her way around.

Miggy:What are the biggest worries you face
for Reese ?

Meagan:That she Won't be treated like all other children her age, and that she
will feel bad she can't see the things that we see daily.

Miggy:Now for a lighter question, have you
ever had any funny conversations/moments you never imagined due to your special
need situations?

Meagan:I can think of two.First, Reese
was walking down the hall at church and a lady said “nice golf club you must
like to golf,” thinking she had brought a golf club to church. Also we were at the store one day and
the cashier told Reese she needed to put her cane up on the counter so she
could ring it up and we could pay for it!

Miggy:How can people best approach or respond
to Reese? Is there something you wish other people knew so as to avoid awkward
or hurtful situations?

Meagan:I would say just approach her like any other child sometimes she knows
people by their voices other times it is nice if people tell her who they
are.

Meagan:I feel like this has been the biggest challenge I have ever faced yet I have
received the most blessings from being Reese's mom. I have learned not to judge people at all and treat all
people kindly because we all have struggles and challenges and we are all
doing the best we can. I have learned that people are so kind, I have watched
people interact with Reese and give so much love and service to our family that
I am constantly amazed and blessed by the family we have and the wonderful
community of friends we have!

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Um, did you all just fall in love with Reese? I sure did. I want to thank Meagan for sharing her beautiful Reese with us--what a doll. I love that Meagan said this has been the most challenging, yet the most blessing-filled part of her life. I think a lot of us can related to that challenging/yet blessing filled juxtaposition of life. Thanks again Meagan. Hugs to you and your wonderful family.

As always if you or someone you know would like to be part of the special needs spotlight series please email me at thislittlemiggy at gmail dot com. If you've emailed me and haven't heard back I promise I'm getting to you!